4 days post Lap surgery and confused

[Roro1]

Hello ladies,

This is my first post, I am new to this page and very thankful for it.

I had my surgery Tuesday 19th, which was to remove a 5cm cyst on my right ovary. I was told in recovery that there was no cyst but I had stage 4 endometriosis. Pouch of Douglas obliterated by adhesion. I was not told why this was not removed, all i was told is that there are numerous ways that this can be managed.

Day 4 and I am confused and emotionally broken, I do not know what my next steps are. The medical note says follow up is in 4 months. I do want to have children in the future. I have been on all kinds of contraception (which was meant to help with the cyst since 2010). 6 gynecological internal examinations all suggested a cyst, how was this missed?

Can surgery get rid of the endo on the pouch of Douglas?

Any success stories of one getting having children after endo?

Sorry if I am all over the place, I am looking for answers and some sort of reassurance that all will be well.

Thanks

[Nightingale89]

Hi, one of my best friends has endometriosis and polycystic ovaries. She had a couple of laparoscopies in her late teens/early 20’s to remove it and naturally conceived and birthed two kids in her mid 20’s. My sister in law has polycystic ovaries as well and again naturally conceived and birthed my nephew in her mid 20’s. My mum had endo, cysts and fibroids and still had me at a mature 38 albeit after three rounds of ivf.

As for me I’m waiting on my laparoscopy to find out if my issues are related to anything my mums passed on to me but I’ve suspected if there’s anything anywhere it will be in and around pouch of Douglas too. The surgeon who will do my laparoscopy informed me that she can have a good look around everywhere but is only qualified to remove it from certain areas, I.e. if it’s on the bowel she can only diagnose it and will have to refer me to a specialist surgeon in Aberdeen who specialises in removing it from bowel.

Hope that gives you a bit of reassurance and might offer some explanation X

[Roro1 in reply to Nightingale89]

Hi Nigtingale,

That is reassuring, thank you, makes sense why he did not touch the POD, would have appreciated being told the reason though.

Hope you don’t have to wait long for your laporoscopy. Big hugs xx

[Bobbob16]

I'm not sure about cysts and kids (i'm only 20), but I had endo covering my pouch of douglas and the surgeon totally removed it all (he had to cut into it and cut it out because it was a really deep pocket). The only part of my endo which wasn't removed was on my ovaries but he burnt that off instead to prevent infertility. Hope this helps x

[Roro1 in reply to Bobbob16]

Hi Bobbob,

That’s reassuring. Thank you xx

[Thecraftyadder]

As I think someone said you need a specialist to remove it, not a general gynecologist so you should get referred to a BSGE centre. You definitely want them to manage you now and discuss surgical options with them.

On the subject of it being missed I was constantly told my issues were cysts/ ruptured cysts for years. I saw a specialist privately because I was so frustrated and he didn't feel anything on my internal examination (though recognized the symptoms of endo), we had even discussed removing my ovary during surgery as according to another hospital it was constant cysts but during surgery he found no sign of any cyst but deep infiltrating endometriosis in my uterosacral ligament (another low down area connected to your back) Its takes time to process all the information after surgery. Relief at a diagnosis; shock for how long its been missed; fear of what it will mean for the future. I'd write a list of questions you want answered at your follow up. I'm sure it will be clearer soon

[Roro1]

I really appreciate all your ressponses. I was so emotional the last couple of days, I’ve woken up feeling a little optimistic. Though still have many questions that I need the specialist to answer. Thank you 😊